The joys of getting older

Recently, I attended the Living Positive Victoria event for HIV Long-Term Survivor’s Day in South Melbourne and realised something I guess I’ve always known: the support of your HIV-positive peers can be crucial in helping you to understand your journey and to know you’re not on your own.

The value of peer support

Way back in the 1980s when I received my diagnosis, there were no treatments, incredible uncertainty about your prognosis, and so much unfair stigma in society directed towards people with HIV. Many people lived closeted and despairing lives. Many worried if anyone—their sex partners, their families, friends, or even employers—might react badly. With the help of a counsellor at the then Fairfield Hospital, a couple of us newly diagnosed guys decided to set up a peer support group and call it Melbourne Positive Friends. We met every Thursday night in each other’s homes and shared our stories and frustrations about living with the virus.  Later it became a standard thing for AIDS Councils and PLWHA groups to provide these groups, but then I think it made the difference to so many of our members who joined.

The mortality from HIV was of course very confronting. Very sadly, many of our group died and we attended their funerals wondering who would be next.  Will it be me?

Living with a possible terminal diagnosis is a terrible thing and the only positive I can take from those awful years is that I remain grateful for that early support and counselling from HIV agencies and for the advocacy from those groups to get better treatments which of course saved my (and other Long-Term Survivors’) lives.

The medical and nursing staff from those days were friends who were willing us to survive, doing extensive research, creating drug trials, and trying as many new treatments as became available.

Of course, some like AZT or zidovudine had serious side-effects, like muscle wasting, which some of us still live with.

I’ve never believed that I was stronger than the poz people who didn’t make it and I don’t think there is much value in trying to take too much credit for survival. Maybe good genes? More likely just good luck.

The HIV community that rallied around us during those difficult times—the care teams from the AIDS Councils, the district nursing services who visited our homes despite all the AIDS hysteria, the families and the partners who stayed by our sides–made us feel like we were valued enough to keep going.

The response to HIV was unlike any other illness in our generation. It created this thing called the “HIV community” and we are all the better for it, straight, gay or non-binary. It gave us a voice to politicians and policy makers, taught the general community to take a broader view of sexuality and helped LGBTIQ people to learn to look after their health, particularly their sexual health, with suitably trained medical professionals.

One of the researchers and doctors who has been with us for pretty much the whole journey has been Professor Jenny Hoy, the Director of HIV Medicine at the Alfred, who has been Principal Investigator on over 200 clinical studies at the hospital. One of her clinical interests is in the role of chronic inflammation in people with HIV and what we might do to prevent some of the serious side-effects and conditions arising from it.

We have known for years that HIV causes inflammation and those who lived the early years without treatments could be most affected. But we now know that even on the best treatments available, there is still an underlying issue with chronic inflammation.

In a recent presentation for the NAPWHA Bolder Online program, Jenny Hoy explained that when the immune system gets turned up too high for a long time, the immune system continues to pump out white blood cells that can attack healthy tissues and organs (1). In small cuts or abrasions on the skin the white blood cells help to repair the damage quickly. But in chronic inflammation these white blood cells can contribute to the damage by over-responding to the situation.  This is problem for overweight people in particular and some people with HIV with a lot of visceral fat. The immune system see these calls as a threat to your body and attack them with white blood cells.  And this process can lead to heart disease, diabetes, cancer, arthritis and bowel disease.

How to manage inflammation

Not very joyful, huh? Of course not, and we know these inflammation-related processes accelerate in people with HIV as they age, sometimes bringing ageing co-morbidities earlier than we might expect. So, what to do about it? Adopting healthier lifestyles like giving up smoking, regular exercise including weight training, a healthy diet full of fruit and vegetables, avoiding lots of refined sugar, sports drinks, commercial fruit juices and processed meats, and avoiding recreational drugs and alcohol are pretty obvious things to do. Maybe also look to adopt a Mediterranean diet including lots of greens. And getting a good amount of restorative sleep every night.

Jenny says those who have serious levels of chronic inflammation can find out through a blood test from their doctor. Called a test for the level of C-reactive protein (CRP) in your blood, it arises in the liver. If the level is between 1 and 3 milligrams per litre of blood, this is often a sign of a low, yet chronic level of inflammation. Although this is not a foolproof indicator and inflammation can be present regardless.

The benefit of statins

So, what to do about it medicine-wise? Apart from taking your HIV antretroivirals and keeping your viral load down, the clinical interest these days is in statins. Many of us are them already to reduce cholesterol and the risk of heart disease. In the overseas Reprieve clinical study of 7,000 people with HIV over a five-year period, it was shown that people on Pitavastatin experienced a 35% reduction in the risk of heart attack, stroke, peripheral vascular disease and related illnesses (2).

Statins reduce the bad cholesterol in your arteries to help decrease the levels of plaque and improve the health of your blood vessels. Online research reports other benefits like fighting viral infections and protecting the eye from cataracts, for instance.

Of course, ageing is also playing its role for many of us. Your body doesn’t last forever and there is something called “cell senescence” in which a cell ages and permanently stops dividing to produce new cells but does not die. The cells build up in your body and can contribute to ageing illnesses including cancer and other diseases. How you can reduce senescence is a subject of major scientific research projects but suffice to say, the healthy lifestyles we referred to above are major ways to combat it.

It’s not great fun getting old and frail, and I probably had my tongue in my cheek entitling this piece as I did. But there is joy in ageing, just visit the links below to interviews Daniel Reeders did with HIV long-term survivors for the NAPWHA Beyond Resilience project. (3) Clearly, they point to having time to socialise with friends and family and arranging social events for special occasions as one source of joyfulness. Reading books, going to the movies, and maybe even writing down your thoughts for a publication like Positive Living magazine may give you some ways to add joy to your life.

  1. Professor Jenny Hoy’s presentation on chronic HIV inflammation from Bolder Online, NAPWHA, 23 May 2024.
  2. REPRIEVE—Randomised Trial to Prevent Vascular Events in HIV
  3. NAPWHA Learning Podcast

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